[Dear internet, we have a guest poster today! The following was written by Flora, who provides her own introduction:]

Hi, I’m Flora. I am honored to be a guest blogger here, coming at the issue from a background of having multiple disabilities, which has ultimately resulted in my viewing my FSD as being like any other disability. My views are strongly informed by the social model of disability, rather than by a medical-model approach. (Please remember that the social model of disability doesn’t mean that no one needs medical help, or that many disabilities don’t cause genuine impairment– it’s just that society regards some problems as “normal” and makes allowances for them, prioritizes medical treatment for them, and those problems are therefore less disabling. In any case, what the medical model of disability means, in the language of the disability rights movement, is viewing a disabled patient as a collection of defects and malfunctioning body parts, not as a whole person. Being in contact with this attitude was not good at all for my mental state. I avoided seeking treatment for a long time because the medical tendency to reduce full human lives to collections of symptoms and dysfunctions was so terrifying and dehumanizing.)

I should also mention that an effect of another one of my disabilities is hypergraphia, so fair warning: expect long posts from me. I’ll try my best to not throw in too many extraneous words just for the sake of writing, though.

And, oh yeah… sometimes, I’m angry. Hopefully, everyone reading this should be familiar with the “argument from tone” fallacy. I have a big block of PTSD-related issues to plow through in trying to empower myself and get effective treatment, and I’ve been frustrated by the medical profession and the mental health profession, especially the latter, when trying to talk about this stuff. I’m chipping away at it, very slowly, but long story short, I have a right to be angry about social and medical attitudes towards FSD, female sexuality, disability, and emotional distress, and I can’t always turn my frustration into something you could say at a tea party. It’s not about you, unless you’re a person who actively uses your privilege to perpetuate those attitudes.

I’m not going to go into a lot of detail about when and how I first discovered I had FSD, for now. (I have vulvar vestibulitis and interstitial cystitis, which developed at the same time and which I thought were one condition for years; they seem to tie in with a few other things I experience, which seem to all relate in one way or another to oversensitized nerves sending pain and injury signals when there is no injury. I probably have vaginismus too, although I think that’s inevitable when nearly every single experience of any type of penetration has been painful.) I was 17 and it was a traumatic time in my life for other reasons, and the bare facts of what happened symptom-wise, stripped away from everything else that was going on emotionally at the time, probably sound a lot like many other women’s.

Basically, things that were “supposed” to feel good or at least neutral were painful, and I was feeling every time I urinated like I had a low-grade UTI that never fully went away. My gynecologist couldn’t find any infection, and my family wouldn’t talk about it with me. I found a description in a book (this was over ten years ago) of vestibulitis, and thought “hey, that sounds like what I’m experiencing,” but I couldn’t find any resources specifically about it. I was afraid to look for them out of fear that I’d end up being told it was all my fault and that there was no hope for me. So I spent years avoiding any kind of relationships, and pretending, whenever I could, that it didn’t exist, although, of course, that didn’t make it go away.

But that’s as much of my personal history as I’m willing to talk about for now, other than to say that pain should always be taken seriously and not blown off. What I wanted to talk about was the role of heteronormativity in the diagnosis and treatment of FSD– whose pain is considered valid and why. Like a lot of people in the world, I’m not heterosexual. I guess the best label to describe my attractions would be “pansexual,” but all of my most emotionally intense relationships have been with women. This apparently changes some people’s attitudes towards whether I need or deserve treatment for my pain. It shouldn’t, but it does. So my first post here is about heteronormativity in FSD treatment.

So… heteronormativity is hard to define, but it encompasses a lot of things. Some of the things I can think of that it includes are: assuming that everyone is heterosexual by default until proven otherwise, that heterosexuality is the most normal and natural means of human sexual and relational expression and superior to non-heterosexual expressions, that sex means heterosexual sex and specifically intercourse, and that heterosexual relationships and sex are more loving, meaningful, purposeful, fulfilling, and gratifying than non-heterosexual relationships and sex. And structuring all sexual and relationship advice around this assumption, all medical guidelines, all erotic material, all sexual toys and devices, all views of the path your relationships, sexuality, and life should take.

It also, in my opinion, includes some other assumptions that leave even certain types of heterosexual relationships out in the cold: the assumption, for instance, that everyone is monogamous and that monogamy is natural/superior for everyone, and that all couples are cisgendered and that being cisgendered is superior and the only natural means of expression.

Anyway, that definition out of the way…

The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.

As an example, here’s a questionnaire. There’s a large section on sexual pain. Great– that’s something that’s bothering most of us, right? There are a grand total of thirty questions you can only answer if you’ve had intercourse in the past six months. Very detailed questions about the onset, type, location, etc, of pain. Of the questions you get to answer if you haven’t had intercourse, a high number of them are things like “When did you last have intercourse? How often was your partner’s penis able to enter your vagina? How long have you been able to tolerate thrusting? How often did you experience pain due to intercourse? Are you now or have you ever been a member of the Communist party?” (Sorry. I… use humor to make this stuff more bearable for me, a lot.) And why all the questions about “penile penetration” and “your partner’s erection”? What if your partner doesn’t HAVE a penis to begin with? Then you don’t deserve as much help, apparently– even if you want penetration of some type.

Is anyone seeing the problem with this yet? A woman in a heterosexual relationship in which she’s at least attempted intercourse is automatically going to appear to have “more symptoms” by the test’s measure of it than a woman who has just the same number of symptoms and the same amount of pain, or more, but isn’t in a heterosexual relationship in which she’s attempted intercourse. And will therefore be regarded as more in need of treatment, as automatically deserving of a higher priority, than a woman in a same-sex or asexual relationship, or one who has never had a relationship or attempted intercourse before, regardless of sexual orientation.

It would have been just as easy to replace many of the references to intercourse with references to vaginal penetration of any kind, not necessarily by penis– heck, the first things I experienced my symptoms with were fingers and tampons. The one time I was ever in a relationship with a man involving any kind of regular sexual activity, I knew intercourse was already out of the question, because finger penetration was already much too painful for me most of the time.There’s also a kind of covert heterosexism lurking in the idea that somehow, a woman can’t already have an awareness of her own FSD symptoms and know exactly what parts hurt the most before being “enlightened” to it by penile penetration making her go OW. It might also tie into the sexist/heteronormative idea that women are unaware of their own sexuality or lack sexuality until they’re the target of a man’s sexual attention, but in any case, it’s bogus. I did not need a man sticking his dick in me to be aware of the location and severity of my own pain, and I resent the idea that heterosexuality adds extra “credibility” to my pain that I don’t get otherwise, because I can’t check off any of the many tickyboxes about intercourse on a list of symptoms (and thus appear to be showing “more symptoms.” You want to see “more symptoms?” Do a pelvic exam and watch me yelp in pain, no penises required.)

Then again, the way symptom surveys will automatically prioritize you more if you’re heterosexual may stem directly from the unspoken assumption among many doctors and therapists that the only reasons women ever seek out treatment for vulvodynia are so they can have intercourse, or have babies. During my one semi-long-term heterosexual relationship, I tried to explain to a (male) therapist that I was experiencing pain every time my partner or I tried to put anything in my vagina, even something small. He asked me if I was having intercourse with my male partner, and I said no. His response (paraphrased) was, basically, “Well, why is it a problem, then?”

And this seems to be way too typical, from what I’ve seen and heard elsewhere. That a woman who isn’t in a heterosexual relationship, or any relationship at all, or isn’t planning on having children in the near future, somehow has “no reason” to want to not experience excruciating pain every time she puts something in her vagina, or even rubs the skin around it too much. How about, she might want to use penetrative toys in a relationship with another woman, or during masturbation? How about, she might want to be able to use tampons? How about, she might want to not have to worry, or at least worry less, about wearing certain kinds of clothing, or sitting in the wrong position, or what type of fabric her underwear is made of, or what kind of detergent it’s washed in? How about she might not want to be in pain any more?

You’d think the last one would be the most obvious of all. Would anyone’s attitude change if I flipped the question around when they asked me “why do you want treatment for this?” What would they say if I asked them, instead, “Why do you believe I want to be in pain?” Put the onus on them to answer, to account for why they believe I should be all right with pain as my default– not on me for why I should want to at least feel less of it!

Then again, for all I know, the assumption that I should be expected to put up with the pain might be an extension of sexist/heteronormative ideas, too. Naughty woman, getting into a relationship with another woman? Wanting to put things into your vagina for your own pleasure, not a man’s? Well, you deserve the pain, then! The only thing that should ever go into a vagina is a penis, attached to a man, in a committed monogamous relationship! It belongs to men, not to you! And the only time women should ever have sex with other women is where men can get off to it! It’s no wonder your vagina broke, since you weren’t using it properly, didn’t you read the instruction manual?

(Obviously, I’m being facetious, but it’s actually not too far off from what I was told by my mother– her reaction was basically “Why are you putting things in there in the first place? You put things in there, that’s why it hurts! It’ll stop hurting if you leave it alone and don’t touch it!” She had some issues, yes.)

The amount of misogyny that still runs rampant in the fields of gynecology, obstetrics, and urology, though– sometimes obvious, sometimes subtle– is very disturbing. I probably don’t need to give specific examples. If you’re reading this, chances are you probably have either personally experienced it or known someone who has.

And chronic pain problems in patients of any gender (but more often with women, generally speaking) tend to be blown off and pooh-poohed by a lot of people who will try to convince you that you are just experiencing “normal little pains” that are within the reasonable range of what most people expect to have to put up with in the course of their life, and you, you’re just being a spoiled brat with an entitlement complex, thinking you’re entitled to a pain-free life in a way other people aren’t. Except that most people with pain issues of any kind, by the time they get around to actually having the nerve to ask a doctor about it, have already experienced a lot more pain than most people ever expect to have to put up with as any kind of routine thing, and have probably already been told repeatedly (most likely by people who don’t know much of anything at all about how pain works or how it’s measured) that their pain is normal or just caused by some kind of stress or overexertion, so they should just put up and shut up and stop whining.

I was recently trying to write something about how male promiscuity is perceived, versus female promiscuity, and realizing that it was difficult for me to say anything from my own experience. It’s something I have talked with other people about, with friends, about the idea that only monogamous relationships can be healthy ones, and about slut-shaming and fear of rape making it more difficult for women to have multiple partners or open relationships. The thing is, while I can understand all of this on an abstract level, and have wondered abstractly about whether I want to be monogamous or not, it’s not something I want to experiment with now– explaining to one partner “no, you really can’t touch me here, no matter how much you or your other partners liked it, it really hurts” is hard enough, let alone several partners. I’ve had a few opportunities to experiment with responsible casual sex, but I’ve never acted on them, because I didn’t want to negotiate the explanations, because I was ashamed, because I felt (at the time) that my body was inadequate, because it wouldn’t stop causing me pain. Why would someone settle for me when they could find someone who didn’t have FSD?

I don’t have the sex life I want. I haven’t ever been able to have anything close. And the thing is, the one I want isn’t some porn-movie ideal in which everyone always has explosive simultaneous orgasms from intercourse. It’s got a healthy acknowledgment of the fact that even between normally passionate couples, sex just doesn’t always work out. It can even deal with things like requiring lots of advance notice for penetration of any kind. And I’m afraid that the only way for me to get adequate treatment will be to lie about myself, about my relationships, about what I want, because I am afraid that doctors will not take me seriously when I say “I want treatment”– even if it’s just about wanting to experience less pain!— unless they believe that I have a relationship with a man, who has a penis (no relationships with trans men, everyone knows they’re not REAL men!), and that what I want out of the treatment is for him to be able to put his penis in my vagina so that I’ll feel like a Real Woman ™, the end. Oh, and maybe have babies someday too. That those are the only possible “right” answers.

I’ve heard people say that if men got vulvodynia, it would be taken seriously, and this is probably true, but for both men and women, heterosexuality is still definitely privileged when it comes to who gets taken seriously about sexual dysfunction and who doesn’t, among doctors who even acknowledge it exists.

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This reminds me of something from the book “Willful Virgin.” One piece talked about how heteronormativity defines “sex” as “whatever it takes for the man to reach orgasm.” “How many times did you have sex?” means “How many orgasms did the man have?” By definition then, women can’t have sex unless there is a man present.

The piece ended by saying that perhaps every time you get up to go to the bathroom ought to count as one episode of “sex” if there were only women present.

And yes, “no pain” is valid in itself and the questions ought to be changed.

Hi – I found this when I went looking for interstitial cystitis after my own post. Have you tried pelvic floor physical therapy? Muscle tension (pelvic floor dysfunction) can be a big issue with interstitial cystitis, as well, and cause pain with ummm… any kind of insertion (sometimes it feels like someone suddenly jammed a butter knife sideways in my vagina about two inches up!).

The truth is that it seems that NO pain is “valid” when it is described to a doctor. Though I regularly deal with pain levels that make me nauseous (and occasionally make me throw up), my doctor assures me that “I don’t want more pain medication because it would diminish my quality of life.” REALLY?

Strangely, though I’m sure you would disagree, I think you’re a little luckier than I… unless outside contact also causes you severe pain. My poor hubby is not into ANYTHING but “good old-fashioned sex,” and since it makes me so ill I can’t get out of bed for several days after, we usually do it approximately once a month, mostly when I push like crazy because I’m afraid that if he at least doesn’t get SOME sooner or later it will impact everything else enough for him to leave. If he were willing to be a little more creative he could find physical pleasure that at least didn’t make me bed-ridden.

[…] entertain the idea of FSD as a disability in and of itself (an interesting, new-to-me idea which I cannot claim as my own.) This is a very different perspective, and one that even I struggled to accept – […]

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